The Financial & Emotional Costs of Dementia

New studies show the pervasive toll that the many forms of dementia take on patients and their families, as well as their communities and the healthcare infrastructure.

Last year, the Alzheimer’s Society participated in a Nanos survey in Canada “to gauge Canadians’ knowledge about Alzheimer’s disease and other dementias,” the organization said in a January news announcement that coincided with World Alzheimer’s Awareness Month. The responses of the 1,500 survey participants were sobering: 47 percent said people with dementia could not live well.

The Alzheimer’s Society added that 747,000 Canadians are living with Alzheimer’s or other forms of dementia today, and that figure is expected to rise to 1.4 million within 15 years. In the United States, the Alzheimer’s Association says 5.3 million Americans are living with the disease; in another 10 years, the number of Americans aged 65 years and older who will be living with Alzheimer’s is estimated at 7.1 million. The percentages and numbers of people affected by Alzheimer’s should continue to rise as greater portions of the population reach older age, unless a cure or preventive measures are developed.

Already, dementia is taxing the healthcare system.

An October news release from the National Institute on Aging (NIA) said caring for patients with dementia is more expensive than caring for patients with any other diagnosis.

“In the last five years of life, total healthcare spending for people with dementia was more than $250,000 per person, some 57 percent greater than costs associated with death from other diseases, including cancer and heart disease,” the NIA announcement stated. “The new analysis, appearing in the Oct. 27 online issue of the Annals of Internal Medicine, estimates that total healthcare spending was $287,000 for those with probable dementia, and $183,000 for other Medicare beneficiaries in the study.”

Those costs included funds supplied by Medicare, Medicaid, private insurance companies and by the patients and families themselves.

The NIA study suggested the disparity in costs for the different diagnoses could be due to the fact that patients with dementia typically needed care much earlier versus patients who eventually died of cancer or heart disease. For example, five years before their deaths, 21 percent of the dementia patients in the group studied were already using Medicaid benefits. At the start of that same five-year time period, just 8 percent of cancer patients and 8 percent of heart-disease patients were using Medicaid benefits.

In addition, the NIA study found that families spent much more of their own money caring for loved ones with dementia versus other illnesses. The study found that 11 percent of a household’s wealth was spent caring for patients with other diseases in the last five years of their lives. Caring for dementia patients cost a household an average of 32 percent of its overall wealth.

Despite the sobering statistics, the Alzheimer’s Society is focusing on preserving dignity and quality of life for its patients and families, in part by using the #StillHere hashtag on social media.

“Our cognitive abilities alone do not define us,” said Pia Kontos, senior scientist of the Toronto Rehabilitation Institute-University Health Network. “People with dementia can continue to engage with the world in many other meaningful ways. And supporting their dignity and worth improves their well-being and quality of life.”

This article originally appeared in the February 2016 issue of Mobility Management.